Thoughts From A Guy With A Colostomy (and Cancer Survivor)

It’s 38 degrees outside today and the wind is blustering. It’s not the weather you expect in the Las Vegas desert, but if you live here it’s not surprising. I’m wearing a leather jacket, wool hat, and gloves. I’m walking to the grocery store to pick up some supplies for New Year’s Eve.

The store is a little over a mile away and I could easily drive there in five minutes, but here I am, face into the cold wind enjoying my walk.

For a few years now, I’ve been riding my bike. For the most part, I’m a fair weather rider. When the temperatures start hitting the forties, the bike tends to stay in the garage. When it’s warmer out, I ride my bike to the grocery store to do my shopping. Even with the commuter bike, it’s still a little bit of a project to get going. Because of that, I tended to not ride to the store as often as I could have. I was feeling guilty about not riding so I started walking instead.

I’ve been walking around the neighborhood a lot recently and I feel like I’m discovering it all new. I’ve lived here for 17 years and I’ve never really took my time to explore the place. For example I thought most of the area had paved sidewalks. That is entirely not the case as I discovered walking to the park the other week. I’m on a major surface street with 2 lanes of traffic in each direction, and no sidewalks or street lights. It’s something I never noticed zipping by the same area thousands of times at 45 miles per hour. I didn’t even notice it riding my bike hundreds of times at 20 miles per hour.

Walking slows me down, and that’s a good thing. For that hour it takes me to walk to and from the grocery store, there’s nothing to distract me from the task at hand. My brain disengages from multitasking. For me it becomes very serene and relaxing, even on a cold winter day. So much so that I’m starting to make excuses to go to the store.

For most of my life I always kept my eye on the goal. While never losing sight of your goal is a good thing, having tunnel vision to your goal may not. You may just miss some amazing people and events during the journey.

So what does it all mean? For me, time has been flying by. It seems like only yesterday we started 2014 and now here we are at the cusp of 2015. Before you know it, we’ll be half way through the year. If walking to the store slows down my day and lets me decompress for a short time, I don’t see the down side. I can enjoy what I have and what I’m experiencing without distraction. We are constantly bombarded with outside stimulation, it’s nice to shut it all off sometimes and only let in a what you are in control of.

I know none of what I’ve written is new or Earth shattering, but sometimes it takes a 3 mile walk in cold wind to have a light-bulb moment.

Life is about beginnings and endings. My life as a married person has come to an end and my time as a single person has begun again.

I was not expecting this ending or beginning again in my life, but sometimes a curve-ball comes your way and you have to take your swing. It is not important to share the details of the breakup here. All that it comes down to is the fact that I’m alone again. This last month has been a hard time for me, but I’m managing. I have family and friends to thank for being good, sympathetic listeners when I needed it, coaches when I stumbled and cheerleaders when I needed uplifting. I know they will continue to be there as I move forward with this new chapter in my life.

I’m using the lessons learned from being sick to move forward now. I’m taking one day at a time and concentrating on the things I have control over. I’m breaking down tasks into smaller bits and being satisfied with my progress no matter how slow it’s going. I also make myself okay with the things that have not changed, nor will change in the near future. Making plans to change things are good enough now. As long as I’m moving forward, I’m still moving.

It’s too soon to think about my future with somebody, or not. Of course I have. It’s hard to think about being single, 46 and “broken”. I say broken because of my colostomy. I know I’m not really broken, but I’m not normal either. If I do meet somebody, how does something like that come up? How do I tactfully bring it up in conversation? Do I do it early before I’m too emotionally invested that it won’t hurt if I am rejected because of it, or do I wait until I’m really comfortable with somebody to have a frank discussion about it?

These are questions that are too soon to think about, but I am. How could I not?

For now, though, I am embracing being single again. There are so many things I want to do with the house and try creatively. I’ve started making rings out of coins. I didn’t know how easily it could be done with basic tools. All that is needed is patience and time. Right now I have an abundance of both. There are other projects I want to concentrate on when I have enough money to get the tools needed to make them. I’ve been very interested in building my own weight driven mechanical clock. Making the gears out of wood and designing my own clockworks seems really fascinating to me.

Of course I have my bike and plan to ride it often. I need to get back in shape as I have let myself go. A combination of stress and bad decisions need to be turned around. Hopefully I can do that and make the life long changes I need to make to continue to be healthful. I’ve started with small changes. I’ve stopped drinking soda on a regular basis. I don’t miss it at all, except sometimes. I’m managing. Small steps.

Right now I’m in the middle of a purge. Danielle moved out and now I’m getting rid of so many things that have been weighing me down. When I’m done the house will be simple, clean, and uncluttered. Hopefully my life will reflect those attributes as well.

It’s been a hard month, but now I’m making changes; and that’s a good thing.

There’s no place like home. When you irrigate like I do you have everything set up just the way you like it. It’s taken time to find out what works and what doesn’t work when it comes to the logistics of irrigation and you can make changes to accommodate your needs.

On the road, things are a little different. You never really know what you’re getting into when traveling because at the end if the day you have some special needs.

That doesn’t mean that things have to be miserable when you’re traveling. Over time you learn what works when you don’t know what to expect from your bathroom.

First things first. Make sure you pack what you need. You figure this out over time. The first time I had to travel with the ostomy, I was so nervous about not having access to my supplies I took nearly two months of stuff for a two week trip. Half of my carry on luggage was filed with supplies. Now I take more than I need but less than my entire cache of supplies. It also helps if you try not to deviate too much from your normal eating habits. Eating too far out of your norm will cause you to go through supplies faster.

Make sure you’ve figured out how to do what you need to do without any special accommodations. At home we have a detachable shower head that makes keeping the irrigation sleeve clean easy. I have yet to come across a shower in a hotel that has a detachable head. I figured out how to keep the sleeve relatively clean without it. I also have to change my shower routine because of that.

Being out on the road also means you need better time management. At home my routine is very casual. I have a lot more time. On vacation there is usually a plan to go out exploring. Because of that I need to plan my schedule and plan how long I think I need to irrigate.
The other issue is placement. It helps when things are placed together. Sink near the toilet near the shower. One place had the sink in another room, another, like this have the sink and toilet together, but the shower is a little far.

At the end of the day I had a really good vacation with regard to my ostomy and irrigation. I did forget a shower curtain hanger that I use to hold the irrigation bag containing the clean water, but I was able to improvise. I used very few supplies and even though I deviated from my normal eating, I didn’t have too many issues. It was nice to get back home and have everything right where it needs to be.

It’s been over two years since I’ve been declared “cancer free” and to tell you the truth, I don’t think about cancer much anymore. I talk about it from time to time with other cancer survivors, but aside from the checkups now happening twice a year, it doesn’t occupy much time in my mind.

Now I mostly deal with the aftermath of the surgery that was needed to get the cancer out of me. There’s not a lot to talk about concerning cancer, but I’ll have this colostomy for the rest of my life and I think I can write a little bit about the goings on of having one.

So moving forward I’m changing the name of this blog. It will be the second change since I started. The blog was originally called, Life With Colon Cancer. After my last chemo treatment and my oncologist told me I was cancer free, the name logically changed to, Life With(out) Colon Cancer.

So now I’m thinking about The Ornamental Ass. It was something I said shortly after surgery when I had my tumor removed and I no longer had the plumbing to go to the bathroom normally. My behind no longer had its primary function. That function had been moved to the left side of my stomach, forever. My ass was no longer functional, it had simply become ornamental. It was a joke. The kind of joke an ostomy patient can make about himself. It was and is funny because we all knew I was on my way to healing.

My life as an active cancer patient is behind me. My life with an ostomy is on going. I think there is plenty I can still talk about.

In honor of my PET scan today, I give you Made Me Nuclear by Charlie Lustman.

I met Charlie while getting chemo one day. He was touring around cancer centers in Nevada, playing his guitar and singing songs. He gave me his album which he wrote about his cancer experience. I listened to it often while I was sick.

It’s that time again. Time for blood work and time for a PET scan, my least favorite of the scans.

Tomorrow is blood work. No big deal. They’ll draw some blood in the morning before I go to work. Do a few tests. Should be pretty quick.
Friday is the PET scan. Unfortunately the only time I could schedule it was on the back half of a work day. So I’ll have to leave early to get it done. No eating for four hours before the scan. On the plus side, I don’t need to drink any barium like you do if it were a CAT scan.

Then the following Friday I’ll see the doctor for the results. This will be the first checkup after passing the magical two year mark. My risk of the cancer coming back goes down somewhat after two years.

And yet…

The anxiety still kicks in a little. I feel good, but they still have to do the test and I have to hear the results. It’s the damn lottery all over again.

It’s the same pattern. For months I don’t even think about it. Then about a month out I remember I have a test coming up. Two years ago I would remember the day and time. A years ago I would remember the week, now I’m down to remembering that my tests are sometime during the month. It used to be that I would be anxious for a month before the tests. Over the years that time decreased. Now I’m just starting to get anxious the day before they take blood. All good signs, but it is still two weeks from tests to results.

I’m not sure how long I’ll be on the six month plan. I wonder how testing will feel yearly. I wonder if I’ll always get this anxiety as long as I’m tested?

Two years is exactly how long I’ve been cancer free. You know, it’s been a fairly routine year. I’ve let many other cancer anniversaries pass this year without much fanfare. I’ve noted them and moved on.

Don’t get me wrong, I still remember the dates, but they don’t hold me like they used to.

It took a little over one year from diagnosis to remission. It seemed so much longer going through it and now it seems so long ago. It seems like having the colostomy is so normal now, so not a big deal.

A doctor warned me that the radiation and chemo has aged my insides by ten years. I was told I have the bones of a 55 year old now. The thing is, I’m so much healthier now than before. I do things I didn’t do before. Things that I never thought I would ever do before, old bones or not.

So I have these anniversaries that come and go without much fanfare, but two years cancer free is a big one. At two years the risk of cancer coming back reduces greatly. Before I got here, two years was a finish line. The reality is, the road just keeps going. I need to stay on that road and keep moving. I can’t turn off on to the sidewalk and have a fried Twinkie, as much as I want to.

So something that consumed me for 1/45 of my life is going to impact me for the rest of it. I’m okay with that as long as I can keep it positive. It’s easy to forget the path I was on. At two years it almost doesn’t seem like it happened to me. I haven’t written to this blog in a long time because there is very little beyond the routine to talk about. Cancer is not a part of my life, and that’s awesome.

My next major milestone is five years. At five years I stop seeing my oncologist which I can’t really imagine right now. So I have to keep running and not fall back into old habits… I can do that for another three years.

I’m feeling sick this morning. It’s not surprising because I’m on vacation and haven’t been eating well. I’m eating much better than I ever did before cancer, but worse than I normally do these days.

I have this difficult relationship with food. I love to eat, but now I get feedback pretty quickly that I’ve made bad choices. Unfortunately I usually have to live with those choices for a few days for it all to pass through me.

You would think knowing that, I could control my food intake and make better choices. It seems like my ability to make good choices is severely limited when I have something sugary and delicious in front of me. I seem to be an all or nothing kind of person when it comes to food. I can’t seem to just have a taste of something sweet. I turn into the cookie monster.

Since the ostomy surgery my stomach ache is always located right behind the stoma and it is always connected to nausea. Sometime irrigating helps, sometimes not. When I eat poorly I also find myself filling up the colostomy bag even though I irrigated for the day. Irrigation takes longer as well.

With all that you would think it would be easy to control my diet, but I still struggle with it every day.

I’ve been struggling to try to write this blog for a week now. Some friends and I were chatting a few days ago. The discussion was about survivor guilt. It’s a complicated emotion because on one hand you’re thrilled to have won the battle with cancer and want to shout about it and celebrate. On the other, you know people who are having a difficult road through the illness or have lost their battle all together.

I think all survivors must feel it to some degree. I know my friends do and I know I do. You know that no matter how your journey through this illness went, there is always going to be someone who had a harder time than you. What seems almost routine and successful to you didn’t work at all for the person sitting next to you, and that is jarring. You want there to be a really concise reason why it worked for you and not for somebody else. But there isn’t, and it sucks because it should have worked for the other person.

My friend is struggling with being a survivor. She is struggling with the fact that her treatment was surgery without radiation or chemotherapy. Because she missing those treatments she is struggling with identifying herself as a cancer patient. She doesn’t feel brave for having gone through the surgery and coming out okay on the other side. She does feel that I was brave for going through the surgery, radiation and chemo and came out okay on the other side.

The truth is, I don’t feel brave either. It’s not bravery when you have no choice. It’s not brave to choose chemo and radiation when the other option would probably mean death. The bravest thing we both did was to put our trust in the people who were going to save us. Sure we made choices, but our choices were made based the information the people we trusted with our lives told us. My biggest fear was not the chemotherapy or the radiation, it was the surgery and what my life would be after it.

You know that feeling you get when somebody tells you they have cancer? That, “shit, I don’t know what to say” feeling. That, “my problems are nothing compared to his” feeling. That, “I don’t want to ask how he’s doing because it might be bad news” feeling. That, “I don’t want to talk about my good news because it will just remind him of his bad news” feeling. We all get that too.

But here’s the thing, at least for me. When I was sick, I knew I had cancer and I dealt with the feelings when I was diagnosed and throughout the treatment. Talking about it didn’t make me feel worse, it often made me feel better to get it out there. Hearing somebody else’s good news made me feel happy and not bitter. The truth is, through my journey I had victories. I also had setbacks. That’s life. I like to think other cancer patients feel similar to that but I can’t speak for them. I do know that when I was in chemotherapy, there were very few mopey, down people. We would trade stories about what we had and where we were at and nobody seemed to be keeping score of who had a tougher time than the other.

I know I’m rambling a little at this point but here’s one last point I want to make. That first moment when you get diagnosed. That moment when there is a person telling you you have cancer. We are all the same. We all have that feeling of dread and wonder what our future will look like and how long it might be. We are all “real” cancer patients.

I’m sitting in a comfy chair waiting for radioactive sugar to circulate through my body so I can get scanned. Elton John is playing softly on the radio. I keep my movement to a minimum so the scan doesn’t get muddy. I don’t want the sugar fueling my muscles from moving around too much.

There’s not a lot to do but read, rest and think. I was reading a blog from a fellow cancer patient who also happen to be going through a PET scan. She is feeling similar to I am right now.

It’s funny because up until this moment I wasn’t feeling anxious about the test. Soon I’ll get scanned and it will be recorded, and I won’t know the results until probably next week. Somebody will know, but not me. For some reason not knowing is okay when nobody knows, but once I know the information is out there I get anxious.

They should really find a way to get information to the patients faster. I heard the results are known in hours but we are still left to wait for days.

I know it’s my anxiety talking. I was fine up until I had my injection. Now the thought of having to possibly wait until next week weighs heavy on me. No matter how confident I was, there is doubt that has been creeping in while I sit here waiting…